For my son's night-shift nurse who changed my life without saying a word. I am paying it forward, and I thank you.

Monday, March 30, 2009

A feeding post

Alex is back to eating the way he was before he had the throw ups. it took almost a week, to get back up to the same amount of food, but we are there and going strong. Alex eats about 7-8 oz of food a day, that is 7-8 ice cubes of food. 3 for the morning feed, and 2-3 for the middle feed, and 2 for the last feed. He is eating table food, anything I make for the family he gets also, it is pureed though, I would say about a stage 3 baby food in a jar. While he is eating he still gets 200cc's of Peptamin jr boluses through the tube. I don't use the pump because the nutritionist told us the bolus is a more natural way to be fed, since when we eat and drink, it isn't going in at a consistent rate. He eats his food in about 10 minutes, but the bolus still takes close to an hour, I really think we could speed things up, but honestly we have such a routine, we just haven't. His reflux is nearly gone, well, he doesn't throw up anymore, and rarely do I hear him reflux. I'm quite sure he still has reflux. So he is still on reflux medication.Since we are in the high chair for so long, we read, read, and read some more. Alex loves books, loves to turn the pages, and I have every one of them memorized. Here he is reading 5 little ducklings.

6 comments:

It's hard to change routines. I think that Gavin might be able to tolerate increased feeds at one time, since he's not gagging and spitting up as much, but we are just so used to what we are doing now and it takes a lot of thought and effort to try something new. Still, I think I'm going to try soon!

Seriously, just trying to get a picture of how his feedings go, because I need some guidance from you about how to get Mal back to (or "to," period) feedings - hers are by tube, of course. Except we found out she loves some pudding, so we have to figure out if we can make it with soy milk.

Today we are on all breastmilk feedings. This is after 2 days of diluted soymilk (with Pedialyte) given continuously, and then before that, pedialyte only. We're going the SLOWWWW route, even though I really think the vomiting is over, and it's just lingering diarrhea. Any suggestions? How did your return to feedings look?

Paying it forward

My new normal

I am a mamma bear to 4 boys. I take each day as it comes even when the worst becomes reality. I was forever changed by my son's night shift nurse in 2007, she changed my life without saying a word. I have turned these mountains into victories by going back to school, and becoming a nurse, and will pay it forward until my journey ends with a little crossfit in between.

-Alex was born with Rubinstein Taybi Syndrome.Pulmonary hypertension at birth.Malrotation of the intestines.Uracheal cystPhase 2 kidney reflux (right side)Angulated thumbsmild near sighted in right eyedysphagiaPDA

-At five years old my son Max was diagnosed with type one diabetes. He depends on insulin, and each day is a job to stay alive, he is my hero.

About Me

In the middle of the night at my lowest moment my sons nurse touched my heart without saying a word. I went to school and I'm paying it forward. #newkindofnormal #RTS #typeonediabetes #nurselife #payitforward #crossfit #momswhocrossfit #nurseswhocrossfit